Porcupine

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'I feel a sense of belonging'

By Farrah Sattaur

I went to my first Youth Drop In dance in May. This was a big deal because in the past my anxiety prevented me from going places, meeting new people and trying new things.

The Youth Drop In is held four times a year for youth between 16 and 29 who have disabilities.

I loved it. When I attended I felt like a normal person and no one cared if I had a disability or not. They just wanted to be my friend and hear what I had to say. The DJ has a disability which makes the participants feel more included. He plays modern, up-to-date music. Attendant care is provided for those who need it and this made people feel more comfortable.

They also have a resource table where there are different flyers about other events happening in the disability community. I found a flyer about a mentorship training offered at Variety Village which I attended in the summer. I enjoyed it very much and am now on the Variety Village Youth Advisory Council.

My social worker suggested these social events would be good for me because my anxiety can make me afraid of the outside world. Attending these events boosts my self-esteem and confidence and gives me more courage to go out by myself. Isolation can have a negative effect on your overall health and wellbeing. Now I feel like a new person.

My social worker knew a lot about different opportunities for social involvement for people with all kinds of disabilities, whether visible or invisible. I think social workers are a great resource for youth. I found out about the Youth Drop In on the Holland Bloorview website. I contacted the person listed and she made me feel comfortable, so I wasn’t nervous before the dance.

My parents were relieved that I found a social event that I was happy to be involved in and felt safe going to. They worry about me going out because I’m a woman and hard-of-hearing. But unless parents give their children the opportunity to explore the outside world, they will never know what they are capable of doing.

I think events like the Youth Drop In dance should be offered all over the world. I feel a sense of belonging when I go. We all came into this world with a purpose and I believe we all have hidden gifts and talents.

Never stop believing in the ability of your children!

The Youth Drop In is put on by Holland Bloorview, the Anne Johnston Health Station, Toronto Parks, Forestry and Recreation, the Spina Bifida and Hydrocephalus Association of Ontario and Birchmount Bluffs Neighbourhood Centre. For more information, call 416-425-6220, ext. 3296.

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'I've always been able to push myself'

Ade Adepitan (right) is a British Paralympic basketball medal-winner, an actor and a filmmaker whose documentary Journey of My Lifetime took him back to his homeland of Nigeria to investigate why the country has yet to eradicate polio, which he contracted there as a toddler.

In an interview with The Guardian, Ade spoke about playing wheelchair basketball as a teen in London. “The disabled kids were just cooler, wilder, got up to crazy things,” he said. “We’d be out in the streets racing our chairs, playing basketball, travelling all over east London like a crew. It felt like I belonged.”

Ade’s older sister Omoyile has Down syndrome, so he has a unique perspective on physical and intellectual disability.

BLOOM: Your family moved from Nigeria to London when you were three for better prospects for you, but your family couldn't afford to bring your sister, Omoyile.

Ade Adepitan: They had to beg, borrow and steal everything they could just to get themselves over to the UK. At the time in the '70s if you didn’t have a British passport and you wanted residence you weren’t allowed to access the National Health System for two years.

So my parents had to pay for all of my health care for two years off their own back. And when you come from Nigeria, what people earn in the UK in a month they would hope to earn in a year. So my parents had to pay for braces, operations, sometimes going into hospital.

My dad and mom were qualified as teachers but because they were black, they couldn’t get professional jobs here when they came in the '70s. They had to work as cleaners and security guards, doing two to three jobs at a time while going to college in order to pay for me. My mother and father had to leave their whole family in Nigeria, and my older sister had to stay with my brother’s sister. She would have been four or five.

BLOOM: What was it like when Omoyile finally joined the family in London 10 years later?

Ade Adepitan: It was strange because I didn’t know she had Down syndrome. I left Nigeria when I was three and you don’t understand what Down syndrome is at that age. When she arrived I was a little bit confused. My parents were really happy but it was also quite difficult. I'd been the centre of attention because my younger brother and sister were still fairly little, and all of a sudden my sister comes from Nigeria and she was the centre of attention.

I was 13 and just starting to become a teenager and she was 14 or about to turn 15. It was like getting to know a stranger. Except because she had Down syndrome she had a mental age of about seven, so she was my older sister but she was actually younger than me. All of those things were complicated and difficult to understand.

BLOOM: How did your parents talk about disability?

Ade Adepitan: My parents were always of the philosophy that we should never really be talking about disability but talking about our ability. They weren't keen on me using a wheelchair and wanted me to walk all the time because they thought if I used the wheelchair it was like me giving up and taking a step backward. So in those terms it was quite difficult and you could maybe almost say my parents were a little backwards about disability.

But in the context of education my parents were very adamant that I go to a mainstream school and not a disability school and fought hard for me to go there. And even though my sister went to a special school, my dad fought hard for her to get a City & Guilds qualification in catering, which normally children with special needs don't get. My sister was one of the first kids in our area of the UK to get it, so my parents were very pushy in one respect.

BLOOM: Because of the stigma of intellectual disability was it challenging for you as a teenager to accept your sister?

Ade Adepitan: She was the first person with intellectual disability I'd ever met. You're a teenager and you go through that moody stage where it feels like the whole world is against you. Then this sister comes along and she needs a lot of attention. She was very skinny and there were worries about her health.

I was still going through ‘How do I get over the fact that I'm disabled and have a physical disability?’ and you want to fit in and you don't want to be different. I’d almost come to terms with that and I was thrown this curveball: now I’ve got a sister with an intellectual disability—that was like a double whammy for me.

BLOOM: In The Guardian you talked about how you learned how to walk with braces and how it was very important for your parents that you walked.

Ade Adepitan: For my parents who came from an African culture there was a lot of stigma associated with being in a wheelchair. Even in the UK in the 80s there was a lot of stigma. For my parents it was really important that I walked on callipers to my school which was a mile away.

It was a really hard walk and then my school was a massive school so getting to lessons was really difficult and there was no lift or ramp, so I had to climb the stairs, and I was carrying heavy books with me. By the end of a school day I was exhausted.

BLOOM: You've said that once you learned how to use your wheelchair it was freeing.

Ade Adepitan: When I finally started to use a wheelchair I was really embarrassed for my able-bodied friends to see me in it. But once I got over that it was a godsend and it changed my life. What the wheelchair gave me was independence.

A lot of people ask me why I got into sport, and the most important reason was that I knew if I was fit and strong, I wouldn't have to rely on anyone. When you’re disabled that’s one of the most important things: you have to be fit and strong because you’re not as physically able as other people, so you have to compensate for it with things like fitness.

I found once I was in a wheelchair I could travel long distances. Walking a mile would take the best part of half an hour, but I could push it in my wheelchair in five or six minutes. You can imagine the kind of independence that gives you. Suddenly I could travel anywhere.

BLOOM: Yet when I was in London recently I was struck by how inaccessible the tube and train system is.

Ade Adepitan: When you live in London and you have a disability you have to be almost like Indiana Jones. Every journey is like an adventure and you might as well be crossing through valleys and swimming rivers and stuff. Most of London’s transport system was built during the Second World War or just before and it's inaccessible and that in itself makes things very difficult. It could hold you back if you had a disability and you had to have a very strong mind set and be stubborn.

BLOOM: What was it like in other ways growing up with a physical disability?

Ade Adepitan: In the '80s when you were in a wheelchair or had any sort of disability people assumed you weren't as intelligent as other people and they overlooked you, they didn't really talk to you. Some people called you names like cripple.

For me I had the added thing of being one of the few black people in the UK. I was black and disabled and I felt like I was being hit on all sides. There were some days I felt like I didn’t want to go out of my house I was so pissed off at the way people acted around me. Just the fact of people staring some days made me feel really uncomfortable and I'd think why do I have to put up with this? It took a long time for me to embrace my disability. There was quite a period where I was ashamed.

BLOOM: You've spoken about how you joined a local basketball team that gave you a lot of confidence.

Ade Adepitan: This basketball team was set up by some physiotherapists and their philosophy was about independence. They wanted to make the young disabled individual as independent as possible as quickly as possible because they knew that in later life to be able to go out and have the confidence to travel around London and be yourself in front of people, and not be ashamed of it, you had to be built up and prepared.

When I joined this team I met a load of people my age or a little older and they were extremely confident. They were way more confident than my able-bodied friends, more adventurous and they took more risks. I thought they were cooler than my able-bodied friends.

BLOOM: You've said that the team gave you a feeling of belonging.

Ade Adepitan: Yes. As I started to play more sport I gained a lot more self-esteem. When you're good at something it boosts your confidence but it also gains you respect from your peers, especially your able-bodied peers. Rather than shying away from disability I started to be more overt about it. I'd go around in a wheelchair doing wheelies or talking about how I could be playing for the Great Britain team. My friends at school thought I was the cool one.

BLOOM: What was it like growing up with physical and intellectual disability in your family?

Ade Adepitan: My physical disability and having a sister with an intellectual disability made me so much more open-minded. It meant I also grew up a lot quicker than my peers. I certainly knew more about different groups of people.

Most of my friends would freely admit I was the only disabled person they knew and none of them knew anyone with an intellectual disability. It was no longer a shock for me to meet someone with a disability. I was able from a young age to look beyond people’s disabilities and see them as people. There's only so long you can dwell on why this person has such and such and after that it’s more about the person’s personality.

My sister may have an intellectual disability but she can be stubborn, she can be really intelligent, she can be really humorous and she can be quite annoying as well. People with disabilities have all the same traits as anyone else and that's what I see now more than I see the disability. That came from my upbringing.

BLOOM: Even within the disability community some disabilities seem to be valued more than others.

Ade Adepitan: One of the flaws of the human race is that we have to put everything in groups. It’s easier for us to label people and use a hierarchy in order to understand the world. I’m not like that and I think that’s because of my upbringing.

A lot of people think of intellectual disability as the lowest in the hierarchy of disabilities, but even within physical disability there’s a hierarchy. I think people who are deaf and blind probably don’t categorize themselves in the same position as someone who has a mobility impairment. And even within mobility impairments, at the top of the tree are the amputees and at the bottom are the quadriplegics.

It’s the weirdest and most horrible and most divisive part of the human psyche—our want to categorize everything.

BLOOM: What do you think about prenatal testing for Down syndrome?

Ade Adepitan: It’s something I’ve thought about for a while. I’ve wondered if my parents knew that I was going to be disabled, or my sister, would they have still had us, and I don’t know. I think it comes down to individual choice and I can’t make people’s decisions for them. I can say look, I’m disabled and my sister has an intellectual disability and our lives have been just as rich as any able-bodied person’s. Okay, there are complications, but there are complications in all walks of life, whether you’re able-bodied or disabled. I don’t think life is going to be as hard as [parents] think it will be with a child with a disability. And you’ll be enriched in different ways.

BLOOM: How can we make the world an accepting place for people with disabilities?

Ade Adepitan: Everything starts from what you learn as a youngster. All kids going to nursery or kindergarten should be mixing with kids with intellectual and physical disability from that young age.

Intolerance comes from ignorance and lack of knowledge and lack of knowledge comes from lack of experience. We need to mix all these different groups together from the age of three, four, five and stop separation. Separation is what creates intolerance.

BLOOM: There seems to be less inclusion of children with disabilities in classrooms in Britain.

Ade Adepitan: Over the last 10 to 15 years they’ve embarked on what we call mainstreaming and that’s putting kids with physical disabilities, and sometimes with intellectual disabilities, into mainstream schools. We’re probably nowhere near where we should be. Yet in some ways we’re quite advanced.

Last year when you saw the Paralympics our public really embraced it and had so much respect for people with disabilities. But our government doesn’t always reflect the attitudes and feelings of the general public and that may be because our government isn’t representative of the people they’re governing. There aren’t enough people within the government who have that direct experience with disability.

BLOOM: I understand you’re doing some work with the United Nations.

Ade Adepitan: I’m involved in trying to get disability and the rights of people with disabilities included in the UN’s Millennium Goals. They drew up a load of goals to do with improving sanitation and uplifting women in developing countries, but of eight goals they never made mention of disability.

A British politician is lobbying the UN to get disability on the agenda and she’s asked me to go on a trip to Uganda. Apparently Uganda has a very good record in the way it treats people with disabilities. We’re going over to see exactly what it is they’re doing and to see whether we can pass any of it on to other developing countries.

BLOOM: Tell us about the documentary you did on polio in Nigeria.

Ade Adepitan: I’ve been trying for years to do something about myself having polio and being born in Nigeria, but TV is a ruthless world and the execs didn’t think a show about polio was something that would be high on the ratings.

But after the Paralympics was such a success, Channel 4 put me in touch with some really cool directors who’d been doing some research on the problems with Nigeria’s vaccine campaign. Vaccinators had been shot dead by Islamist militants who claimed the vaccines were part of a Western ploy to sterilize children and wipe out the Muslim population. So the two things came together and it was magic.

BLOOM: What was the purpose of the film?

Ade Adepitan: We went back to find out a little about my backstory and why I got polio but also to find out the statistics and the story of polio there. There are only three countries where polio is still prevalent and Nigeria is one of them. Nigeria is the only country in Africa where polio is endemic. Why Nigeria? It’s a wealthy country in comparison to other African countries and it’s relatively stable, there’ no war going on there. So in comparison to its neighbours, we didn’t understand why.

BLOOM: What are the barriers to eradicating polio in Nigeria?

Ade Adepitan: Polio is prevalent predominately in the north of Nigeria where there’s a serious lack of education. A lot of people don’t go to school because of poverty and are illiterate. So they don’t have the knowledge to understand about polio and its impacts.

There are also people who are very nomadic in the northern parts. So it’s difficult for vaccinators to locate them. And polio is very contagious. One person with polio has the potential to infect 100 people yet 95 per cent of people who carry the polio virus will show no symptoms.

The sanitation system in Nigeria is terrible and that’s the way polio is transmitted: through fecal matter.

Back in 2003 there was a vicious rumour spread that polio was a Western ploy to control the Nigerian population, especially the Muslim population based in the north. And that the polio vaccine contained a contaminant that made children infertile. There was an uproar in northern Nigeria and the government suspended the polio campaign for nearly a year. The polio numbers shot back up and Nigeria has never recovered from that.

On our trip we met some people who refused to have their children vaccinated and there are still a lot of people who believe that the vaccine is part of what they call the white witches—part of the white evil medicine to depopulate northern Nigeria.  

There were some heartbreaking stories. We met one guy whose 18-month-old son wasn’t vaccinated and has polio. He can’t walk and crawls on all fours. In the part of Nigeria where he lives, you don’t want to look on the ground because it’s full of sewage and the stench is disgusting. This boy has to crawl through that stuff. 

He probably won’t go to school because the schools aren’t accessible, so he won’t be educated, his chances of getting a job are low and his life expectancy is low. His life is going to be very, very hard before he dies.

BLOOM: What would your life have been like if you’d stayed?

Ade Adepitan: My parents were pretty well educated, both were teachers and come from a family of teachers, so they would have worked really hard to make sure I had as good a life as possible. But my mom was alarmed and worried enough that she was willing to leave her family in Nigeria to come to the UK to give me a better life.  

There’s no comparison of how my life would have been. The opportunities that I’ve had since I’ve been in the UK—I work on TV, I’m a known face in the country, I’ve represented my country as an athlete, I’m respected despite having this disability, people talk about me rather than my disability and I’ve been able to be educated—all of these things would have been greatly reduced.
 

My sister who stayed in Nigeria really struggled at school. They didn’t know what Down syndrome was and for the first few years she was put in a mainstream school and the teachers treated her really badly because they didn’t understand her disability.

BLOOM: Tell me about Omoyile’s life now.

Ade Adepitan: She lives with my mom and she gets to do loads of different things. She’s really into drama and going to drama classes. She’s into art. She’s on a work training course to try to find a placement. She’s worked before but because of the economic problems in the UK she was let off. But now she’s doing some training and maybe will find a placement in a canteen or cafeteria or in a super store.

Omoyile’s a feisty character. She’s got a really strong personality, she’s got a sense of humour and she’s really mischievous. She’s opinionated as well and she’ll work someone out straight away.

BLOOM: You talked a lot about the importance of independence. What about people who have more significant disabilities who can’t have that level of independence? Can they still have rich lives?

Ade Adepitan: I’m sure they can. When I talk about independence it comes on many different levels and in different forms. Independence for me is something you would take for granted, like getting on public transit and going to the mall or to work. But for me it’s something I have to plan if I haven’t got my car.

For someone who is more restricted, they have to find independence within what they can do, and independence may be having the choice of who they have as their carer.

BLOOM: What advice would you give parents of kids with disabilities?

Ade Adepitan: You have to be open-minded, open to everything and surprise yourself. There are lots of things that my family—me and my mom and dad and sister—have achieved that we thought we’d never achieve.  When you start off trying to tackle these tasks, you get into thinking this might not work, but that’s not a reason not to try it.

Don’t be afraid to make mistakes. Mistakes are part and parcel of life and you learn a lot from those mistakes. You should go out there and surprise yourself.

There are things you may think your children can’t do and they might not be able to do it now, but with some work they probably can. In 20 years we’ll be looking at people with all kinds of disabilities and being surprised and amazed at what they can do and looking back and thinking 20 years ago how primitive we were to put so many boundaries on our kids.

BLOOM: Do you consider yourself a filmmaker or an elite athlete or an actor, given you’ve done all of the above?

Ade Adepitan: I don’t think of myself in one way. I’m doing such a variety of things. I’ve made four documentaries. The last one was in Mexico about mental health. It was a really intense documentary about the treatment of people with psychiatric disabilities in institutions, and also about a group of people who have psychiatric disabilities who have come together to fight for their rights.

I’ve been so lucky. If someone had told me 20 years ago when I was dreaming of being an international basketball player that I’d be able to go to the Paralympics and win medals I’d have struggled to believe it. If someone said that on top I’d forge a career on TV and be making quite tough and hard-hitting documentaries I would have thought they were taking the mickey out of me and having a laugh.

So many doors have opened. The United Nations has asked me to work with them; I’m asked to go into schools to do talks; I still play sport and have a team that we’re trying to set up to become a type of academy of excellence for disabled kids.

Life is short, we don’t know how long we’ve got and what will happen tomorrow. So it’s about maximizing your skill set and what I’ve learned and really enjoyed over the last 20 years is I’ve always been able to push myself and be at the edge of what I’m doing.

This year I made a documentary on changes in benefits for people with disabilities in the UK. That was incredible because that meant I had to tackle things with a journalistic brain. Every day was learning something new.

Then I went off to Nigeria to make the documentary about polio. It pushed me emotionally and was tough on my presenter skills. I had to learn how to interview people.

Following that I made a documentary in Cuba about athletes defecting. I speak a bit in Spanish but we decided that all the interviews would be done in Spanish. And it was the same in Mexico. I’m challenging myself. 

Photo from Channel 4.

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'Nothing is permanent'

By Sandra Joy Stein

When my son was two years old, he played like most toddlers I’ve known. He built block towers and yelled in frustration when they toppled down. He climbed every structure at our neighborhood park and protested when it was time to leave. He complained when a beloved toy stopped working, broke, or the batteries ran dry. I decided, half-jokingly, that I would try to teach him the Buddhist Law of Impermanence—the notion central to Buddhist teaching that things change and nothing lasts forever. I suggested to my husband and other parents, with a strong dash of humour, that this law would ease our children’s sense of loss or disappointment, which would only intensify as their lives progressed. I do not claim to be a master of Buddhist thought, but it did occur to me that if our children were to know and accept the Law of Impermanence at a young age, it would increase their chances of living happy lives.

When an autoimmune encephalitis rendered my formerly healthy son severely neurologically compromised at two-and-a-half years old, my lighthearted lessons to him became my son’s own profound teachings to me. In two weeks he went from crafting percussion instruments out of anything he could get his hands on to thrashing around in a hospital crib. He went from exclaiming excitedly “Mommy! An upside-down M is a W!” to being non-verbal. He went from riding a two-wheeler with training wheels for miles at a time to being non-ambulatory and tube-fed. We lived in hospitals for 15 months before being discharged to home with near-round-the-clock nursing care, a wheelchair, a supine stander, a bath chair, and a rigorous home-based therapy schedule. Our former lives a distant memory, it was clear: things had changed.  

The type of encephalitis my son has (anti-NMDA receptor autoimmune encephalitis) actually has a good prognosis, with early studies showing the vast majority of those affected making substantial recoveries, some even after several years. Although my son has not yet “turned it around” or “woken up from this,” as his neurologists are wont to say, several of his symptoms (dyskinesias, hypertonia, spasticity) come and go. As soon as we think we’ve adequately addressed some type of pain, discomfort, or spasm, we are on to some new challenge in the bodily consequences of a brain in atypical flux. Many folks with this disease report sudden status changes, moving from perfectly healthy to critically ill and then non-ambulatory to walking and non-verbal to talking. We do not know what to expect every single day. We have to make decisions for the moment we’re in with some regard for the consequences of those decisions on an unpredictable future.

I have never had such an abject lesson in the Law of Impermanence than from my son on his journey through this illness. Everything I ever worked for, saved for, and hoped for changed in a way that laid plain the centrality of the notion that nothing is permanent. I realized that despite my attempts at understanding this concept, and even thoughts of teaching them to my then-healthy son, I had no real grasp of the true nature of impermanence until now. Parts of the teachings were brutal, like living for months in the ICU where, due to severe dysautonomia—a potentially life-threatening symptom of this disease—my son’s heart and breathing would randomly and unexpectedly stop, then resume, often requiring emergency resuscitation. We lived moment-to-moment, never knowing what the day would bring, while bearing witness to 11 families as they lost their children to freak accidents, random (and not-so-random) violence and disease.

Nothing, nothing is permanent.

For a time I found it impossibly hard to be so uncertain of what would happen next. Would he live to see the next day? Would he ever get better? I struggled with the non-linearity of his symptoms and agonized over my sense that he had hit the nadir of his course in this disease (which we were told by several doctors) only to realize that his condition would in fact get worse. As he grew more stable I began to worry about the next phases of his illness, wondered about the effectiveness of rehab and feared the potential for relapse, even prior to approaching any semblance of recovery. I wanted to know when I could reasonably expect improvement and whether my son would walk again, talk again, eat again, laugh again, smile again and play again. I wanted to prepare myself for all of the possible outcomes as if one of them would be the permanent, static conclusion to this total upheaval of our lives. All the possibilities and my inability to prepare for them were a kind of emotional torture. A wise friend suggested that I not try to solve any problems that I didn’t actually yet have. It was time to embrace the notion of impermanence as a mechanism to preserve what might still have remained of my sanity.

It is not an easy lesson to fully absorb and it scrapes against both practical strategies for getting through the day and all the lessons on futuristic thinking taught to me by my parents, professors and profession—to plan, save, schedule, anticipate, predict. When asked if I can attend an event, make an appointment, or get together with a friend, I go through the motions of planning with the knowledge that I do not know whether I will be able to show up. In reality, nobody knows whether they will be able to show up to anything in the future. Because of my son’s teachings, I just happen to know profoundly that I don’t know.

I now approach impermanence as a discipline, like one might approach meditation or yoga (neither at which I am particularly skilled). If I can adjust my orientation to the present moment, take stock of it, and interrupt any tendencies to escape it, I am able to accept the uncertainties inherent in all of our lives, uncertainties that most folks (myself included) prefer to ignore. Without permanence there is no "outcome" of my son’s disease, no before and after, just my son in the moment he is, on his extraordinarily difficult journey. His symptoms change so readily—sometimes his head is oriented to the right, his gaze fixed, his teeth grinding loudly and sometimes his head is in midline, his eyes focused and his jaw at ease. Some days he smiles, most days he does not. Some days he moves his legs. Most days he does not.

While so much has changed and continues to change about my son from a physical standpoint, his essence feels totally intact. He was always compassionate, always a deep thinker, always asking me what I was thankful for, all day every day from what I thought to be a surprising young age. And when I answered "I'm thankful for you!" he would respond "Awww, that's so sweet." He is still that being, locked inside a body he cannot at the moment control.

He has changed the way I interact with everyone and given me a greater ability to see beauty in all forms of humans, particularly those who we think of as disfigured or deformed. I walk through the world differently because of him—I am aware of much more and afraid of much less. I stare down my fear every day and walk that fine line of accepting his current condition and working to maximize his potential for what might be, all while striving to stay firm in the here and now.

Despite my earlier hubris at thinking I could teach my son a Buddhist principle that I had not fully grasped myself, my son is the one who has taught me how to surrender to the fact of impermanence, and how to live fully in the moment. He has taught me how to hang up the phone with the dysfunctional medical supply company (or any of the other pitifully dysfunctional systems that we rely on to get through the day) and to see that he is, at the moment, stable, breathing and peaceful, or thrashing, screaming and in distress. At our most difficult moments, I find great comfort in telling both of us, “It won’t always be like this.” What it will be like, I cannot tell.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

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'They are each so valuable and perfect'

By Nikki Cochrane

I never thought that at 24-years-old I'd be a mother to seven children with special needs, but that is exactly where life has taken me. I live in India with my best friend and serve with Sarah’s Covenant Homes, an orphanage for abandoned children and young adults with special needs. I'm a foster mother to seven children aged five to 16 with a variety of diagnoses, including cerebral palsy, autism, blindness and HIV. I can’t imagine my life without these seven little people in it.

Leading up to my time in India, I worked at March of Dimes in Toronto in the Conductive Education program and did my Developmental Services Worker school placement in a Grade 1 class at the Bloorview School. I was able to see a life where children with special needs are children first—where they are loved and accepted and given the tools they need to thrive.

Here in India life is very different from what I experienced back home. My kids were all abandoned by their birth families. They were sent to a government orphanage as babies and many never left their beds. My five- and six-year-olds, whose only diagnosis is blindness, can't walk or talk due to the neglect they experienced in those formative years. My kids came under the care of Sarah’s Covenant Homes in 2009, and this July, we moved together as a family; the first real family they've ever had.

We do therapy on the balcony every morning, and we have seen huge strides. In the past week, with the help of a set of ankle-foot orthotics donated from America, one of my little guys stood all by himself for the first time. He can now stand for over three minutes and tries to high-five everyone who watches him. My little girl, Jasmine, who is blind, has learned how to feed herself and is no longer dependent at meals. 

We don’t have fancy equipment. With no wheelchair for Molly, we improvise the best we can with chairs, using scarves as chest straps and pillows to keep her positioned properly. 

Many Indians believe that people with disabilities are cursed, and so our kids aren’t widely accepted in their community. Lily, whose cerebral palsy makes speech difficult for her, and who is unable to walk independently, is very bright and would thrive in school. A school accepted her last year, but kicked her out shortly after. We are homeschooling her in the hopes that if we get her to a certain level, they will see her potential and be unable to say "No." I hate that anyone would not see the potential in my kids, because they are each so valuable and perfect.

Last week we took the kids to the park. Parks in our city are gated and the gates open at 5 p.m. Old men come to sit on benches and children and their parents flock to play on the equipment. Of course, none of it is at all accessible, but our kids have so much fun, and it is one of the only places with grass in the city, which our kids love to feel and smell.

I waited in line for the swings with my little girl, and finally it was our turn. Not wanting to sit her on the swing by herself, as she may fall, I sat down and put her on my lap and began to swing. She threw her head back in joyful laughter, which was stopped short when the park "watchwoman" stormed over and demanded that we take our group and leave.

I ignored her and kept swinging. She yelled again. She reached out to grab the swing to hold it still, pointing to the street. Not knowing the words in Telugu that I wanted to tell her, I began arguing in English, telling her that my children have just as much right as any other child to be here and to play. Some parents stepped in. Some on her side, pointing to the street, and others on my side, translating what I was saying. Eventually, she waved her stick at me in a threatening manner and then went back to her seat, glaring. We kept swinging, and the laughter continued. My babies got a chance to be kids and to have fun that day, but nothing is without hurdles here in India.

My kids are loved now. I love them as I’ve never loved anyone else. They get warm baths at night. We dress them in their pajamas, pray together, and cuddle in bed. They are available for adoption, and I pray for mothers and fathers for them—parents who can give them more than I can, and who live in a country where they'll be accepted.

Every night we read the story “I Love You Through and Through.” I know it by heart now and the kids laugh when it comes to the part where we pretend to eat their fingers and toes. They fall asleep in our bedroom, where we cuddle with all the beds pushed together, and they wake up safe in our arms. My kids may not have the equipment they need, or the ideal therapies, or even the ability to go to school, but for the first time in their lives, they are loved in a family. We are working on everything else, but I am so grateful for where they are now.

Please read more about my life as a mama to my kids at my blog One Tiny Starfish.

You can sponsor a child at Sarah's Covenant Homes.

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Happy Thanksgiving!

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Disability puts siblings at risk of mental-health problems

A recent Pediatrics study found siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems than siblings of typically developing children.

The study at the University of Arkansas for Medical Sciences (UAMS) drew on data from a national, large-scale American survey. Researchers identified two groups of siblings aged five to 17 years: one had 245 siblings who lived with a child with a disability and the other had 6,564 siblings who lived with children without disabilities.
 

Parents answered questions about siblings on the Columbia Impairment Scale, which looks at a child’s function in 13 areas, including relationships with family and friends; emotional health; school work: and use of leisure time. The surveys were done twice to look at changes over a 12-month period.

I interviewed Dr. Anthony Goudie, assistant professor in the Department of Pediatrics at UAMS and principal investigator.

BLOOM: How did you get interested in studying siblings?

Anthony Goudie: I came from Cincinnati Children’s Hospital and we worked on a grant from the Ohio Developmental Disabilities Council that looked at the effects of families caring for children with disabilities.

Part of the first round was doing some focus groups of parents of kids with disabilities. We wanted to understand their daily lives, the services they obtained and the ones they lacked. Through the focus groups we identified a group we weren’t focusing a lot of attention on and those were the other children in the family.

There were some very poignant and emotional stories about how siblings were reticent to ask their friends to come over to play because the child with a disability might be disruptive, or their friends weren’t familiar with severe mental disabilities. There was a certain amount of embarrassment that the child was going to act up and while the sibling understood, his friends wouldn’t.

BLOOM: Your study found siblings of kids with disabilities to be almost three times as likely to have significant functional impairment. What does significant functional impairment look like?

Anthony Goudie: These are kids who have problems getting along with other members of the family, problems making and keeping friends, and behaviour issues. They tend to have a lot of anxiety and emotional problems, in terms of feeling unhappy, afraid or nervous of certain situations. They don’t tend to be able to feel that they can express their anxieties of fears, so they internalize them. They also have problems focusing attention at school.

BLOOM: How could these problems affect a child in the future?

Anthony Goudie: A clinical association has been made between functional impairment and higher rates of depression and mental illness.

BLOOM: How did your study work?

Anthony Goudie: We used data from the Medical Expenditure Panel Survey, which is essentially five interviews equally spaced over a two-year period. In two of those interviews, spaced about 12 months apart, parents answered questions on the Columbia Impairment Scale.

First we wanted to see if there was a difference between the group of children with siblings with disabilities and the group of children with typical siblings.

Overall, we found kids who live with children with disabilities have significantly higher functional impairment than kids who live with children who are typically-developing. They’re almost three times as likely to have these problems.

If you’re a primary-care physician you need to know that growing up with a child with a disability is a risk factor for mental-health issues. If you’re seeing a child with a disability you need to ask how the other children in the family are doing. Mental-health screening and counselling and sibling support groups have been shown to be helpful. Our paper was geared to the health system. We want the health system, insurance providers and policy makers to develop family-based solutions that consider all members of the family.

BLOOM: What changes did you see between the two groups over time?

Anthony Goudie: The group who live with siblings with disabilities and the group who live with typical siblings both increase in functional impairment scores on average.

The scores of kids who were significantly functionally impaired at first measure who live with a sibling with disability do come down at the second measure. But not nearly as much as kids who scored with functional impairment at first measure who have typical siblings.

BLOOM: How do you explain the difference?

Anthony Goudie: I attribute the difference to potential counselling. If you’re a parent of children without disability and you notice one child starting to act out at school or having social interaction problems, you might be more proactive in getting that child some counselling, or identifying the problems on a well visit to your doctor.

But if you have a child with a disability, you might not have time to actively seek some help for the sibling because your time is focused on the child with disability. And the problems of the other child might pale in comparison to those of your child with disability.

There’s also a socioeconomic aspect. The families of children with disabilities in our study were poorer. And that’s not because poor families have higher rates of children with disabilities. That’s because parents have to leave the workforce to care for their child.

So the families of the children without disabilities may have the insurance status and socioeconomic means to go out and get counselling or proper primary health care for their kids while the other group of families doesn’t.

BLOOM: You suggest that increased functional impairment in siblings of kids with disabilities is because parents have less time and attention to spend on their typical kids.

Anthony Goudie: Yes, we make that association and it’s based on what is in the literature and backed up by what parents tell us anecdotally. They do have less time and they get less sleep and it ends up meaning less time to spend with the typically developing children. These caregivers are certainly not neglecting their other kids. They’re just as concerned about all of their kids. It’s the reality of the extra demands they face.

BLOOM: Do these findings apply to families of kids with all kinds of disabilities?

Anthony Goudie: A child was defined as having a disability in our group if parents responded ‘yes’ to a question about the child’s functional limitation based on a medical condition. The survey doesn’t ask what the condition is. However, data from the 2005-2006 National Survey of Children with Special Needs asks questions about a child’s functional limitation and their specific condition.

In this survey, most of the children identified with functional limitation were complex kids. Forty per cent had difficulty breathing. One-third had [intellectual disability] and 28 per cent had problems swallowing and digesting food. These kids have multiple issues. I think kids with less significant disabilities take a lot less time and effort to parent.

BLOOM: What message should parents of kids with disabilities take from this study?

Anthony Goudie: I think they need to be a little more proactive in looking at the triggers of functional impairment. All kids have behaviour problems, but if your child has behaviour problems and they’re feeling unhappy and sad and having trouble with school work, I’d recommend you seek some counselling or a medical opinion.

BLOOM: I think this study creates pressure on parents who already feel that they’re not doing enough for their child with disability. Now they have to worry that they’re not doing enough for their other kids. And how easy is it to get mental-health services for a child with a therapist who understands the unique experiences of these families?

Anthony Goudie: I think in the U.S. it’s extremely difficult to find that kind of help. Just getting primary health care is an issue for a lot of families so specialized mental-health care is even a greater issue. There are some good sibling support programs. Seattle Children’s Hospital has a really good one. We’re in the conceptual stages of trying to get one off the ground here. And we need interventions that don’t exclude families who are poor.

BLOOM: There are other studies that have shown positive outcomes of growing up with a brother or sister with a disability. What do you make of those?

Anthony Goudie: There are exceptional families and parents who are resilient and take a positive outlook that this is going to bond them even more and put a lot more context into their household. But I’m not sure that the other studies included families who are socioeconomically challenged. I’m not sure that they had the right demographic.

People with economic means are going to have ways to overcome some of the challenges and get the right amount of counselling and support. Most of the other studies I’ve seen have 20 to 30 siblings. Our study with 245 siblings of children with disabilities is the largest I’ve come across.

Editor's note: There are excellent resources at the Sibling Support Project. Holland Bloorview hosts a sibling panel each year where brothers and sisters talk about their experiences growing up with a sibling with disability. Other resources can be found in our Family Resource Centre and by calling our Warmline at 416-424-3888 or toll-free at 1-877-463- 0365. Hear about a children's book written by a family about siblings: Melanie And Tommy Have Two Pet Rats and One Syndrome.

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